Wednesday, August 26, 2009

Feeling very Blue this morning. I capitalize it because it's feeling very much like a place, a state that's just next door to where I live. We're right on the border and sometimes it feels like the fog from over there spreads and covers my house.

I think about Simon and how he's doing and just want so much more for him. Isn't that a parents place though? To always want more for your child? I want the best for him of course. It's just that the 'more' I want right now for him is what most new parents are getting without even thinking of it.

I'm watching him play by himself right now and while he seems as content and engaged as can be, I feel this missing element...the 'other' that Simon gets so little of.

We watch a video of this singing group for little ones (and big ones too for sure) and I see how fascinated he is with the images of so many different babies, toddlers and children. They are singing, and toddling around and he just smiles through the whole thing. It was like that sing-along that we went to at the library.....and can't go back to. I can see him when we're out walking just watching other children. I want more of that for him. I want him to have playmates that he can do parallel play with occasionally learning about sharing and taking turns and having things grabbed out of his hands and doing the same to other kids and then learning from it. He gets so little of that let alone time with other kids in general.

I keep thinking "he could handle it right?" going back and forth between "sure he could, look at him" and "riiiight, it's not how he looks but how his heart is functioning" and then "but he's gotten two colds now and it hasn't affected his heart" to "but what if the next one is more serious and/or the flu". And that last ones helps me remember that it's not worth it and I'm back to where i started, wanting more for Simon. Just wanting it and not being able to make it happen.

I have great gratitude for swimming twice a week and it's not enough....I think...I don't know. Being a new mom is hard enough.

I just feel it this morning. The weight of it all. Eight medications, enteral feedings, OT, a compromised immune system, heart failure, vomiting, sweating, mistakes that aren't life threatening but not healing, colds, ER visits, desperately not wanting to go back to the hospital but knowing that it's always on the table, isolation, managing on one income, and all of those other things that I can't think of right now because we are getting ready to head out the door.

Lots of sighing this morning.

Here are some pics from yesterday's visit to the Zoo with Simon's Vitzvah Carol (aka ICU nurse and special love bunny). See Laura, you do get out.

Um...Mom? Do you think this is a good idea?? Look at her eyes!

Hey this is so much better than a spinal tap!! I like hangin' with Carol now.

About Us

Team Shimmy was started the day our baby, Simon (aka Shimmy), became suddenly ill (8/1/08) with a rare heart condition called Cardiomyopathy. That day, friends and family rallied around us to form Team Shimmy. This team, which has grown to include new friends and strangers from all corners of the world, has sustained us with love, food, kind words and listening ears.
We spent 4 tumultuous months in the ICU at Children's Hospital Oakland. Simon has been steadily improving since that day. He was fed through a tube in his belly (a Mic-key) until December 2013, was diagnosed on the autism spectrum, receives various types of therapies and is still on meds. Oh, and he's the happiest, most engaging kid we've ever seen. Jaime (Mama) works in public health and Laura (Mommy), a former school social worker, stays home to take care of Simon (and to take him to his MANY appointments). To see a 10-min documentary about our family, go to www.youtube.com/watch?v=uGh8dFp2oqk.
This blog is a chronicle of our experience thriving in the middle of a nightmare. You'll laugh a lot more than you expect. Promise.
Contact us at lafitch@gmail.com or jaimejenett@gmail.com